You read right, Sunday Blog 52 – which means I have been writing Sunday Blogs for one year of Sunday! I was initially inspired by the quote from the Seth Godin book Shipping the Work which is all about the concept of getting your creative thing (whatever it is) out into the world:
We don’t ship the work because we’re creative. We’re creative because we ship the work.
Seth Godin, Shipping the Work.
This week I shipped a video of a song I had written recently, accompanying myself on my awesome kangaroo skin drum that I made since I finished up my Executive Director role at the end of March this year. Back in those early weeks when I swam around luxuriously in all the spare time I had. When I posted the song I noticed that wow, videos do resonate. I have only read that about fifty million times in every single social media course I have ever taken. Blow me down if it isn’t right.
So I thought I would celebrate my one year Blogiversary with a bit of a flash back through all the images I have made for my 52 blogs. Since I drew my line in the sand on 29th August 2021 and committed to Sunday blogging. To sharing musings, podcasts and books, the stumbles and the wins. Turning pro.
Now there is one more line to draw in the sand. Daily writing. As Hilary Mantel said in this excellent article:
I feel shy of saying this, because to non-writers it sounds so lazy—but if, seven days a week, you can cut out two hours for yourself, when you are undistracted and on-song, you will soon have a book. Unoriginally, I call these “the golden hours.” It doesn’t much matter where I find them, as long as I do.
The sound of my darling husband emptying the dishwasher always puts me in mind of this description. The bashes and crashes of the mugs being returned to their spots, the plates slid into the drawer all summon up visions of chipping. (I know, just shut up already, he’s emptying the bloody dishwasher!)
But hear me out. When we married nearly 14 years ago I was gifted a set of six wine glasses and a matching water jug from my workplace at the time, and within six months every single one of the glasses had been broken. To be fair, the set had been bought by the Executive Assistant who barely knew me, but still.
I first heard this description of someone’s dishwashing abilities in 1979, when my eldest sister spent some time in Ireland living with our Irish grandfather’s relatives.
I have been watching my social feed awash with images and stories of Ireland as a friend of mine has been touring there this Summer. I’ve been reminiscing.
Back in 1979 my sister was staying at the ancestral farm with our second and third cousins twice removed or something – I can never keep track of these things. She was 22 and single at the time, and our relatives were casting around for potential suitors for her in their small town. A diminutive 50-year-old man with not much in the way of beauty or charm was suggested by one of them. It took some creative embellishment to dream up a selling point for such a bizarre (and ewww) pairing. But with some confidence, my sister was advised that “he has a fine hand with the delft.” She was not convinced, and it was not to be.
As a young person, this anecdote to me was just screamingly funny. But over time, (and my match-making relative was mature and so presumably had some life perspective), a find hand with the delft seems to be something not to be so quickly overlooked.
But on reflection, I didn’t like those wine glasses that much, whereas the husband, who perhaps does not have a fine hand with the delft, is a keeper.
The month was November, the year 1997, and in Thessaloniki, Greece’s biggest city where I lived at the time, it was already getting bleak and cold. Many people find it hard to picture a cold Greece but believe me it was – and November was the beginning of months and months of winter. I was struggling with the technology – a phone card and a stubborn phone box – to ring my eldest sister for her 40th birthday. So often I would traipse down to the phone box and find it wasn’t working. Or that my phone card would run out of money just when the conversation was warming up. Or the phone card I had just bought didn’t work.
I was well into my second year living in Thessaloniki, and this was one of the many moments I wondered at the wisdom of returning for a second year. I Missed My Family. I missed the milestones, the get-togethers, the regular birthdays that would mean a family meal, hugger-mugger in my parent’s house, a cake, candles and a harmonious warbling of the Happy Birthday anthem from my many relatives.
It is now almost inconceivable to imagine life without a mobile phone, but that was largely the norm in the 1990s. So for those living abroad in the sort of places like Greece where a home phone connection was not feasible on an English teacher’s salary, there was only one option – The Phone Box. The birthday call to my sister was limited in time to the amount my wretched phone card allowed for. It was too far away, too short a time, too poor a substitute for being there to mark her birthday. I hung up the phone and sobbed.
I look back on the dark times of Greek phone boxes and telephone cards and am weak with gratitude that I have so many ways to connect instantly with people anywhere in the world. By video if I want! As we speak another sister is currently holidaying in France. She can call me as I wander around Bibra Lake for my evening constitutional and I can share the evening’s beauty with her and she can show me the charm of lunchtime Rouen.
For all the dreadful faults of social media and mobile phones, this gift of communication is, well, a gift.
I met a dear friend for coffee on this crazy full moon Friday. It was not me who said this, but it very well could have been. I had to say “me too, me too”. We both solemnly agreed that it wasn’t in fact the job, it was our own lamentable propensity to say yes to everything that meant we had once again pushed writing to the margins.
With painful irony I saw a journal entry this weekend that I had written in my diary of February 2021; “You can in fact only do one thing at a time. That is difficult for me with my weighted-down to-do list. Perhaps a forced exit from this role is the only thing I can do to truly interrupt this pattern.”
I left this laden-down role in March 2022 and enjoyed several blissful weeks, almost amounting to 2 months, of feeling foot loose and fancy-free. But like the poor old Ancient Mariner, the albatross of not being able to say no has followed me to the other side. And here I am, too busy again. A freelancer with no free time.
Wherever you go, there you are.
But my friend and I clinked coffee cups and agreed that we would exercise and write before doing any freelance work, and if that meant we didn’t get to our desk before ten, so be it!
Another writerly friend and I had coffee on Saturday and she advised me it is actually a lot easier if you just work on the damn book every day, rather than on the weekend.
Something in this just made sense, so this is me, day two of working on the damn book every day.
It will be late, but that goddam book will be done!!
Trigger Warning: This post begins with mention of sexual assault – please take care when reading.
I remember my very first time giving my all as a citizen to an Inquiry in my home state of Western Australia. It was the Inquiry into the Prosecution of Assaults and Sexual Offences, shortened to PASO. At that time I was attempting, with very limited funding and many hours of volunteer work, to establish and grow a group of women impacted by sexual violence to provide a strong, independent systemic voice into the system. Hell, I even dreamed of women being able to access legal support when giving evidence in sexual assault crimes because in this instance the victim is as much, if not more on the witness stand than the accused.
A submission was done to PASO, and we were invited to address the Inquiry Panel. At the time it felt positive, empowering, like the effort and energy of telling my story would help to create change. I pressed the button in the lift, went into the important bland building, sat and answered questions. People were kind.
Perhaps I wasn’t as aware then as I am now of the many layers of privilege for me as a victim of a single incident trauma in my mid-thirties. I had access to Managers of services in health and justice, and readily shared my feedback and suggestions for improvement. Like anyone, I had no idea about so many things until I experienced first hand what it is like to lose your power like that, and find your way back to the light through the darkness. My path was short and straight from dark to light and I realised very soon most people’s paths were not short, they twisted and turned and getting back out to the light was not always a possibility.
After the PASO Report was written, I was invited onto the Committee that would oversee its implementation. This also felt promising, until the government changed, and the incoming government indicated that it wouldn’t be bound by this Report, created through tax payers dollars. I vainly hoped that any way maybe something would happen. I sat on that Committee, year after year. As I describe in my memoir Not My Story;
I am the only person who is volunteering their time to attend; everyone else is getting paid (often rather handsomely) by their usual employer to be there. As well as being a victim, my day job is working as a not for profit professional. Victim representative, not for profit professional. You stand out for all the wrong reasons.
It’s like I am the only one at a black tie event; but I didn’t get the memo and have come dressed up in a fancy dress costume – in a bunny suit. It’s not just the discomfort of being conscious of my metaphorical bunny suit as I sit at the table; I’m also constantly shrugging off nagging doubts that I’m not doing enough, that I’m not representative enough (who is?), that I’m providing the appearance but not the substance of victim engagement. But if I decide that I can’t quite stomach continuing to attend this meeting, I know the victim voice will be completely absent.
Not My Story memoir, page 189
In that particular case, the matter was taken out of my hands when I missed a meeting, and the Terms of Reference were changed, conveniently removing Victim Representative from the membership list. I think it’s safe to say that not much happened in terms of real change for victims after the 2007 Report.
Back in the world of health, where I have spent much of the last twenty years, there have been too many reports to mention. But I will not forget the morning of April 2019 when the Sustainable Health Review Report was released. The Report had consumed more than 18 months of my life as I was on the Panel. It had briefly broken my heart when in some extra optimistic flight of fancy I thought we might be able to convene a Citizen’s Jury about our health system. Working question – “How can we afford the health system we want?”
Needless to say, that did not happen, but in the endless compromises that followed a great report was generated.
So in April 2019 there was a fancy breakfast launch with a room full of our finest health professionals. Showing admirable courage, the health department had invited me to be as a Panelist for the launch event. I was asked what difference the report would make to our State. “None if it isn’t implemented. This is a diet plan, not lost weight.”
I battled it out over a couple of admittedly very disrupted years, but trying to create change through the right channels no longer felt right for me. So I left after thousands of hours of meetings and spreadsheets all aiming to show some kind of imaginary progress that the newspaper headlines would beg to differ about.
The fiendishly difficult task of getting shit done is never facilitated by an absence of any funding to do the actual work.
Creating a report is a finite, doable task. Staying the course for actual change is another matter altogether. We can all draw up a diet plan with great feelings of virtue and determination. But losing that weight and maintaining a healthy weight is incredibly difficult.
I think Leigh Sales is on it. Creating reports appears to have been colonised by those determined to maintain the status quo.
It’s Sunday morning in a Wheatbelt town and we’re closing out a Song Writing Retreat with a voice lesson in the church next to the Quindanning Hotel. The acoustics are amazing. We are doing vocal warm-ups, just singing sounds but no words. The magic that comes from voices joined overtakes me and the shivers start.
Then we start singing the word “Home” our voices swirling around in harmonies and my voice thickens until I can’t sing.
Home. My house and darling husband. A sudden piercing yearning to be home.
Home. My childhood home and how I had to leave it in order to become a fully realised adult.
Home. My adult daughter still at home – just – but moving on at some time in the next six months or so.
For ten years I lived in Europe and wondered where is my home? But I’ve been back two decades and the thought of living anywhere other than Australia is now foreign. But still, the song lines of Europe are so strong.
Whenever I stay I always make my hotel bed room so it is always inviting and ready for the Muse. I thank my hotel room before leaving it for good. My Quindanning Hotel Room gave me a couple of good-ish nights sleep and somewhere to retreat to when banging out a song (quite literally, on my recently created drum) for the evening’s performance. It was a little temporary home I got to stay at.
Now I am home.
I say a prayer for those with no home, with a broken home, a stolen home.
My latest podcast rabbit hole is Jon Ronson’s BBC Sounds Podcast Things Fell Apart. It looks at sliding door moments in the recent history of our culture wars. Each episode is compelling, but I got particularly stuck on Episode 5, A Scottish Jewish Joke, set in 1988 when the internet was first emerging.
This episode documents the very first identifiable social media shaming of Brad Templeton, whose Waterloo University hosted page published a joke everyday, including the very questionable Scottish Jewish joke of the episode’s title. It was randomly published using algorithms on November 9, 1988 via a program. This happened to be the anniversary of Kristallnacht, a coordinated wave of anti-Semitic violence by Germany’s Nazi party.
In the furore that followed, we humans had a chance, a sliding door moment to set some standards on what is published on the internet. At first it looked hopeful. The page was banned from Waterloo University, and Stanford University banned it too. Stanford’s decision was documented in an essay that noted the “love of freedom of expression mattered less that its collective search for a better way in which every person is acknowledged as an individual not a caricature.”
What an amazing online world that would be.
But it was not to be a lasting victory for kindness and inclusion. John McCarthy, tenured Stanford University professor, and one of the biggest names in computer science in the 1980s, was horrified by the thought of any constraints placed on the wild west world of the emerging internet. He rebutted this decision, and concluded “we’re really exploring the leading edge of computing here. Let’s keep exploring it. Don’t try and cut it off. We discover the boundaries of free speech by literally running into them, or crossing them.” 24.49
And that’s the internet we’ve all lived in for the decades that have followed. A Libertarian engineer’s utopia where free speech thrived unencumbered, with no regard for the dangers it might cause society. And by dangers I mean not only offensive speech but fake news too. And because unencumbered, free speech leads to conflict, which keeps people online longer than harmony does, it’s a profitable ideology for tech companies
Jon Ronson, 25 minute mark of Episode 5, Things Fell Apart.
What is so fascinating about this story is that the journalist who first shamed Brad Templeman in the 1980s is still a journalist to this day, still at the Waterloo Region Record newspaper. Recently she found herself on the wrong side of the culture wars when she wrote a piece downplaying the dangers of White Lives Matter leaflets that had been distributed in her town of Baden. Her investigations had revealed that such leaflets didn’t usually result in a march but were scattered around as a strategy to see if people would turn up.
In the roasting that followed her article, she experienced what Brad Templeman had experienced forty years previously. The fact that she was right and there was no riot did not eventuate in an apology or review of her public roasting as a racist. She reflected;
A true Free Speech advocate doesn’t differentiate between junky speech like insensitive jokes, and thoughtful arguments that are meant to help us understand the world that we live in.
Luisa D’Amato, journalist from Waterloo Region’s The Record,
Jon Ronson finishes the episode; “And from that day on, the internet would, in its peculiarly terrible way, influence the ferocity with which every culture war would subsequently be fought.”
I found myself thinking recently – do I need an interview outfit? Then I thought that no, I was past it and I was Past It. There are no interviews I want to subject myself to, no jobs I want to obtain. It is both Miserable to be past it but Wonderful to be Past It. That torture of the teens and twenties, thinking “What Am I Going To Do With My Life?” What career, partner, children will I have?
And when all of these things have largely unfolded (I mean I will still work, but I am not looking for a career, I’m looking for an exit stage left into the land of wide-open days with lots of writing space in them.)
I remember catching up with my sister back in the 1990s on a short trip home from Europe which was my base for a decade. Her second child was crawling around on the floor, a robust 18-month old who hadn’t even existed when I had left Australia.
“I’ve had my children”, she said, and again in case I hadn’t heard, “I’ve HAD my CHILDREN!”
It seemed very relevant at the time, and when seven years later I finally joined her in the ranks of motherhood, destined to be a solo mother to an only, I finally understood the wondrous completed feeling of having all the children I was destined to have.
Time does shoulder you gently, or not so gently off the stage, but what a wondrous privilege it is, being able to watch the next generation tackle the “what will I do, will I marry and will I be a parent” conundrums.
The years of experience behind me can pad me like a solid back of a chair, give me confidence to navigate this strange and wondrous world, and enjoy my view from the stalls.
The quote above is from book I have been obsessed with for some months now. The book is called Hippocrasy – How Doctors Are Betraying Their Oath and is written by two doctors – Rachelle Buchbinder (a rheumatologist and epidemiologist) and Ian Harris (an orthopaedic surgeon). It’s the kind of book that must be written by doctors, because mere mortals take on doctors at their peril. Ask any politician who has tried to take on the AMA.
I’m not done with last week’s debriefing of Episode 8 of the Impatient Podcast. Guest Dr Ben Bravery talks quite a lot about second opinions, and how the “vibe” of the consultation with the second oncologist he approached when in the stressful and surreal process of trying to work out what cancer treatment to choose changed. It was when Ben mentioned it was a second opinion. The oncologist was not impressed, his face darkened and the phrase “doctor shopping” was bandied about.
A surgeon’s disdain of patients seeking a second opinion and consulting Dr Google can permeate medicine, but as the quote above says, the surgeon has a vested interest in you choosing to have surgery. For something as important as consenting to surgery, a second opinion is a must. In Ben’s case he needed to have surgery, but this second opinion was so different from the first opinion, and very likely saved his life.
I have fantasised for years about a mythical healthchoice.com.au website for Australians to be able to consult. I imagine us plugging in what it is we are considering undergoing (knee replacement, elective caesarean, cancer treatment…) and seeing all our options in a matrix that has been independently reviewed.
We are SO far from that reality. We make most of our health decisions in a vacuum of information. We usually don’t even know what she would expect in terms of the optimal treatment (with the exception of some cancers – thanks Cancer Council! and we certainly have no idea what our surgeon’s success rate, infection rate, revision rate etc might be. The murky world of medical device companies, whose customers are doctors, is largely opaque to the public. Their goal is to get surgeons to use their devices, and our consent conversations with surgeons are littered with the marketing patter of medical device companies.
We also are not usually aware of all the costs that we will be up for if we undertake surgery – hospital costs, anaesthesia – all of this needs to be painstakingly researched or discovered after the fact when it’s all too late.
Ben Bravery compares consenting to surgery as making a significant purchase where we naturally research, shop around, ask others what they think;
It’s completely natural to do that and it should be encouraged. I tell all my patients go and get a second opinion. And don’t stop there. If you have the means, get a third one. And bring in the paper you’ve printed from the Internet. Bring me in the blog about the person with Lived Experience that has a treatment that you want to talk about. Because my skill is translating that space between all the medical knowledge I’ve inherited and your life. That’s how I see myself, right. I’m not an expert in the disease, I’m an expert in how to translate that to the person sitting in front of me.
The Impatient Podcast, Episode 8 – interview with Ben Bravery, 52 minute mark
Another quote from Hippocrasy:
Saying that a proposed treatment is ‘the latest’, ‘what everybody’s doing now’, ‘targets your disease specifically’, or ‘very safe now’ says nothing of its effectiveness or, for that matter, its actual safety. And saying ‘there’s now quite a lot of research on this treatment’ doesn’t tell the patient whether that research is favorable, but does make them think that it is. Doctors, like salespeople, spend a lot of time talking to people and guiding their decision-making. With practice, it becomes easy to project your own wishes onto the patient.
Hippocrasy, page 127
We shouldn’t necessarily trust the doctor with these decisions [consent to procedures]. They often have a biased view of benefits and harms, they don’t necessarily recommend what they would want for themselves, and they’re not the one taking the risk.
Hippocrasy, page 131
Having spent two decades as a consumer advocate in one form or other, I want to shout these top tips from the rooftops – when going to consult take a friend! They can take notes and make sure all your questions are answered. Prepare your questions! (if you have no idea what to ask, which is perfectly usual, start below:)
Expect your surgeon to be willing to discuss what you have found out on Dr Google. Move onto the next surgeon if they’re not. Challenge them further and ask if they are willing to share key safety and quality statistics.
In life we seem to have one or two grooves we endlessly riff off. For me, informed consent is one of those. We have a long way to go to get to informed consent to medical procedures, to our mythical healthchoice.com.au.
I am not sure we will ever get there if we continue at the current doctor-friendly (i.e. glacial) pace of health reform and change that we are currently travelling at.
When I first started my Sunday Blog 43 weeks ago – back in the dim distant land of August 2021 before I had taken the radical decision to leave the Health Consumers’ Council – I had on top of my list of “blog topics to write” about the myth of the patient-centred health care system. The blog post idea was number 1 on the list and has languished somewhat in the months that have followed. It was supposed be like an opening volley for my next planned book – a non-fiction book about the health system.
Back in August, the working title for the book was “The West Australian Body Owners Guide to the Health System.” Over the months it has shifted and morphed (many people’s responses to the working title certainly encouraged a re-think) into The Patient Centred Myth.
The quote from today’s blog comes from Episode 8 of The Impatient Podcast, an excellent podcast by cancer patient Nicole Cooper and her brother Sean Crank. They interview Zoologist, Cancer Patient and Doctor (in that order) Ben Bravery. It’s an excellent interview and worth the time to listen – there’s so much in it that I had to keep stopping and transcribing bits.
After Ben Bravery finished his cancer treatment he decided to retrain as a Doctor (he was already a Zoologist) and was planning to become an Oncologist. But his medical training put him off the idea.
I was struck by … the way that Medicine was taught. First of all, it’s archaic, and it’s hostile. And I thought that the focus was on the wrong things … people have this idea that if you focus on the whole person, or the whole patient, and you connect and you understand and you give time to listen and you educate families, and you write down notes that they can understand and you make extra calls when you need to, that you’re going to lose “The Medicine” … That you’re going to lose the anatomy and the chemistry and pharmacology. But you don’t. … It’s not a trade-off. But the bulk of medicine has just focused on the bio medical stuff. … And then they use the excuse that there’s just no time to do the other stuff.
The Impatient Podcast Episode 8 – We’re All People – about the 42 minute mark
Archaic. Hostile. Like our humanity is the enemy in medicine.
Interestingly he has decided to become a Psychiatrist, and I love what he says;
I don’t have a lived experience in mental illness, I have a lived experience in cancer. But I’ve got lived experience as someone who’s very sick and I see very little difference between the mind and the body. And I’m all about breaking down that stigma, because they are illnesses and they can be treated and they can be understood.
The Impatient Podcast Episode 8 – We’re All People – about the 45 minute mark
So while I am no longer running our state’s patient advocacy non-profit, I am still a consumer representative. Because, as previously noted, it is a vocation, not a job. I am still encountering hostility from time to time in meetings when trying to correct the course of culture and clinical service models back towards being people centred.
I’ve got a lot more to say on this topic. Like a lot. But today’s Sunday blog felt like the right one to strike the first blow on this topic, make a tentative new start on this writing project as I almost near the end of the my shitty millionth draft of my novella.